Transcript

TONY JONES, PRESENTER: To discuss the issues raised in the previous story, I was joined just a short time ago from our Melbourne studio by the Minister for Mental Health and Aging, Mark Butler.

Mark Butler, thanks for joining us.

MARK BUTLER, MINISTER FOR MENTAL HEALTH & AGEING: Evening, Tony.

TONY JONES: What are you going to do to help Susan Henderson's mother, to keep her safe?

MARK BUTLER: Well, look, these are incredibly distressing and tragic circumstances for Susan Henderson and her family and her mother, I know, and I hear about these cases from time to time because, as your story indicates, caring for people with dementia who can experience behavioural and psychological symptoms of dementia, including delusions and paranoia and a whole range of other things, is incredibly complex. And so there's no easy fix to this. There are at least, we think, 100,000 dementia patients in residential care. And there needs to be a multi-pronged strategy. And I don't mean that in a way to fob this off, but we need to get better medication management systems in place, we need to get better environmental design, the type of environmental design organisations like HammondCare operate, so that people feel calm, that they're not getting agitated by their environment. There needs to be better behaviour management by staff in aged care facilities who are able to recognise signs of agitation, signs of aggression before they spiral into the sort of violence that Mrs Henderson's tragically had to deal with.

TONY JONES: In Susan's case, a man suffering from severe delusions was found by a nurse trying to suffocate her mother with a pillow while punching her in the chest. Now, when she went to the director of the nursing home, he said, "Well we didn't report this because they were both dementia cases." That's her story anyway. That's what she says he said to her. So, does the criminal law actually apply in dementia cases in the same way that it does in the normal community, in the outside community?

MARK BUTLER: Well, look, I'm not a criminal lawyer and I don't oversee the criminal law. I've heard of a number of these cases before, at least one of which has resulted in a death in my own state of SA and the police have become involved there. That's a matter for the police and they would have their own expectations in terms of reporting by the DON or by other management at the aged care facility. We do have a different system of reporting in the aged care system. It's not about criminal law. It's not about dealing with assaults in the way that police would. It's about making sure that there are systems in place in aged care facilities to protect the security of residents.

Now, when that system was put in place some years ago, my understanding, my advice is that there was a discussion about whether assaults by residents affected by dementia should be treated as other assaults are by residents who have mental capacity or by staff for that matter. Those assaults are the subject of very strict reporting requirements. It was decided back then that because of the lack of mental capacity on the part of residents affected by dementia, they wouldn't be the subject of the same reporting requirements provided that the accreditation agency, which is responsible for standards in the residential aged care system, provided they were satisfied that the facility had proper behavioural management systems in place, and that is the system that's operated now for some years.

TONY JONES: Well, I mean, in this case it doesn't appear that that is happening because the same man had tried to suffocate another dementia patient in that unit. I mean, does that disturb you? Does that sound like the system's not actually working as it should?

MARK BUTLER: Well it does disturb me. And there are systems in place where a complaint should be made by someone about whether or not that facility has the appropriate behavioural management systems in place. I mean, if a fellow is doing this on a repeated basis in a facility, it raises a pretty serious question in my mind about whether behavioural management systems are in place. Whether they are the sort of environmental designs, psychosocial approaches to try and calm this fellow down or whether they are the use of medication to chemically restrain the fellow or even physical restraint, particularly over the course of night time. So, that does raise some questions in my mind. There are systems in place where relatives, where staff members, anonymously if need be, can make complaints about a facility's systems, but it also does raise some questions in my mind which I'll be asking the Department to answer.

TONY JONES: If this is a crisis now and it does appear to be an emerging crisis, experts are telling us it's going to get considerably worse, a lot worse. They're saying there could be as many as a million dementia patients in the pipeline, that that's what we face by 2050. This is going to be an enormous crisis if that is the case, isn't it?

MARK BUTLER: Well this is one of the two emerging epidemics, I think, in Australia and most of the Western world for that matter, the other being diabetes Type II. This is a very serious health challenge we face over the coming years and decades, particularly if over the time between now and 2050 we don't make serious inroads through medical research and clinical trials into being able if not to cure the disease, then at least to defer it by some years. You're right: the number are very startling and as condition it is a very challenging condition to manage clinically, it's a very challenging condition to come to grips with as family members.

TONY JONES: Well this is what's happening according to Susan Henderson's case and we understand it's not isolated. She was essentially told that if she wanted to keep her mother safe, she would actually have to take her back home, to take her and take care of her at home. Alternatively, pay a lot more money and have 24-hour total care, which she can't afford to do. Is this the situation we're looking at across the board with a whole bunch of cases?

MARK BUTLER: Well I think that's an entirely inappropriate response by the facility, if that is the response that Mrs Henderson had. Yes, there are many residents in aged care facilities who are exhibiting these symptoms of dementia and it is the expectation of the Government and of the community that those facilities can put in place behavioural management situations, if need be through medication and other types of restraint in very serious situations. It's simply unacceptable that a director of nursing or a manager would say that to Mrs Henderson ...

TONY JONES: And yet industry - I should tell you this: industry experts have told us this is rather typical and they have heard what this particular director said and said, "Look, he was probably just being honest."

MARK BUTLER: Well whether it's being honest or not, that is simply unacceptable from my point of view. Yes, we learn as we go and we learn particularly about an individual resident's behaviour as we go, but if there have been repeated instances of a resident behaving in this way, I think everyone would expect a facility that receives very significant amounts of taxpayers' dollars as well as dollars probably from that family can put in place management systems to manage that behaviour. We are beginning to understand, particularly as this becomes more of an issue in the aged care sector, we are understanding better and better how we can create environments, how we can put in place care practices and medication as a last resort to manage those behaviours. So, simply saying, "Well you have to take your mum home," or, "You have to pay for 24-hour security or care," is simply unacceptable, I think.

TONY JONES: It could be a question of money though in terms of how much money the facility itself has to do the things. How much do you think it would cost to shift all dementia units in the country to this best practice type arrangement with specialist care, with person-on-person care, the sort of care that we saw in that HammondCare example that you were talking about? How much extra would that cost?

MARK BUTLER: Well it would cost very significant amounts extra. And dementia is not a specialist or niche part of aged care anymore, it is mainstream aged care. The most conservative estimate I've read is that 50 per cent of aged care residents are living with dementia. Most big provider groups in the country tell me that it's more like 70, even as high as 80 per cent of their residents are impacted by dementia. So, you know, when you're getting to those numbers, you really need to deal with this in a mainstream sense, not a specialist sense. I've been to the HammondCare facilities in NSW. They're wonderful facilities, they're cutting edge. We're learning from HammondCare across the country about best practice in this area. But they deal with people often with younger onset dementia and sometimes with very severe behavioural issues associated with their dementia. Although I think there is a place for those types of facilities, we can't pretend this is something that simply we find a specialist response to or a niche response, this must be a mainstream response.

TONY JONES: Well indeed. And you've talked about the money required and it being very substantial. The aged care reform package includes $41 million extra over five years. That is clearly not gonna be enough. The Department in fact calculates I think that that is $5,800 per patient per year, and when you break it down, it's an extra $16 a day. And that is not enough, it seems, to shift from ordinary nurses to specialist care nurses in the HammondCare-style arrangements. So, how is that big gap in funding gonna be made up?

MARK BUTLER: Well, this builds on very substantial increases in the budget over the past several years. The aged care budget is about 70 per cent bigger than when we came to government and I've unashamedly said that we in the aged care reform package are shifting money from some old priorities in a system built in the 1980s to new priorities. And many of those new priorities are associated with dealing with dementia. About a quarter of a billion dollars in the package are new initiatives to deal with dementia, not only in aged care settings in the community, in hospital settings where people quite notoriously are poorly cared for when they experience dementia. But what we need to do as much as put extra money into the sector is build the capacity in the sector. We are learning through understanding what HammondCare does, through better understandings of medication management, through better environment design, through advising aged care staff about better ways to deal with people's agitation and aggression, building that capacity has to be a very central part of it and there's substantial investment in the aged care reform package to do just that.

TONY JONES: Well it's a $3.6 billion Living Better, Living Longer policy, but the experts are telling us that really that when it boils down is an extra $90 million a year over four years. That's the extra money. Yes, you're shifting priorities, as you just pointed out, but the extra money is not nearly enough, according to the experts. In fact the two peak groups say it needs to be $500 million a year extra.

MARK BUTLER: Well, I understand that and if there was endless money, we would put more money into these things, but as I said, we've substantially increased this budget over the past several years. And I've made no secret of the fact that we've tried to shift as much as we could from old priorities to new priorities. I mean, a quarter of a billion dollars is a very substantial fight dementia package. We're shifting hundreds and hundreds of millions of dollars into new home care supports, home care packages for people who are able to stay living independently in at homes, so long as they get a bit of support through personal care workers, nurses and such like going into their home. That's where the waiting lists are at the moment, not so much people waiting outside the front of nursing homes to get a bed.

TONY JONES: But can you realistically keep people with dementia and increasingly severe forms of it at home?

MARK BUTLER: Yes, you can. Yes, you can. I mean, the vast bulk of people living with dementia in Australia at the moment are living at home, often with the support, usually with support of family members, but increasingly with the support of paid staff visiting their home as well. Technology is providing extraordinary opportunities for people to be able to stay living independently in their own home because we can remotely monitor them - well we can't, not the Government, but private providers have the technology now to monitor people from wandering, from opening the front door and leaving and such like. So, what the community told me over the last couple of years is they don't want a system just built around nursing homes, they want us to think laterally and invest in ways in which people can stay living in their own home for as long as they possibly can. Yes, we have to make sure there's a residential aged care sector for people to fall back on when they need it, but as a last resort, not because there simply aren't enough supports in their own home.

TONY JONES: OK, finally, and to come to that point I cut you off on before, the last time we spoke - or I spoke to you on this program, it was about the overuse of anti-psychotic drugs to use as chemical restraints on people. People were dying in large numbers. You promised to address this issue. But by the same token, we're now hearing from people in nursing homes if you use these anti-psychotic drugs less for chemical restraints, you have these problems with violence emerging. How do you get the balance right?

MARK BUTLER: Well neither you or I know the answer to that. This is a question of fine clinical judgment. And I think what we need to do is make sure that we give clinicians, doctors, nurses and aged care staff as much up-to-date advice as possible about how best do make those judgments.

TONY JONES: We're nearly out of time, but I'll just make this point: we are being told by experts that it's still - anti-psychotic drugs are still being used as frontline medicine to restrain people chemically and inappropriately. I mean, are you absolutely sure that this system you've put in place has stopped the inappropriate use of anti-psychotic drugs?

MARK BUTLER: Well I'm not gonna pretend it's stopped it yet, no. I mean, this is something that is gonna take some time to work through the system to make sure that GPs and nurses have the best advice possible. But again, you can't simply ask them to stop the use of anti-psychotic medications if there are proper systems in place to manage these people's behaviour through good environmental design, through good care practices. So, this is a very, very big job. I don't wanna pretend to your viewers that this is something we can solve through a couple of roundtables. We need to invest in really good research, in really good training of our aged care professionals and health professionals and it's gonna take a little time.

TONY JONES: Mark Butler, a very important and increasingly urgent problem we've been talking about. Thank you very much for coming to join us.